Deciding about a clinical trial - prevention
Posted: Sun Feb 03, 2019 7:39 am
I'm not sure if this is the right place in the forums to post but wanted to get some feedback on a consideration I'm debating to participate in a clinical trial. For reference it is this one: NCT03663387. It is measuring CSF clearance of amyloid and tau from the brain using PET with tracers not approved by the FDA. One tracer has been used for 10 years with no issues and the other (for the tau part of the testing) is fairly new so there isn't a ton of data on side effects/dangers etc. That concerns me a little. As well as 4-6 MRI/CT/PET types of scans in a 2 year period. It is run by a doc well known in this field. supposedly considered a pioneer. Dr. Mony de Leon at NYU. Anyone ever heard of him?
I want to help with prevention since i'm a pretty good genetic sample for risk but I am also being selfish and want to get a free MRI of my brain for a baseline and possibly be able to get the results from the amyloid PET to see if plaques are building up. I also would be interested in officially being neuro and memory tested vs. doing my own self evals.
HOWEVER, we know none of it is a predictor/indicator and might just make me more obsessed about all of this than I already am having found out my apoe status. Also they do a lumbar puncture and that is something I would rather not do but understand why. Also as we all know this going down the amyloid/tau path hasn't brought much result. so is it just another study that will show no effectiveness like every other one?
My stats:
I'm 53 and have two 1st-degree relatives with the disease.
• e4/e4
• Father died of AD at the age of 87 (was diagnosed for 14 years). apoe status unknown but i know he had at least one!
• Middle sister diagnosed within the year. Just turned 65 but has had symptoms for a couple of years I guess. (awaiting 23 and me apoe results - my guess is e4/e4)
• My oldest sister is 69 and fine (e3/e4)
• Mother just turned 92 and is essentially fine. In the last 6 mo. she is asking questions a little repetitively. But I would define her as FINE. (e3/e4)
• I'm fine for now. But scared to death. I'm more physically like my middle sister -- which I'm sure is irrational for me to think about but...I'll still bet money on it.
Meanwhile I am semi on Dr. Breseden's protocol and actually do feel that some of the supplements I'm taking along with exercise and brain training has helped. I've always eaten very healthy so I have not needed to do much of a change in that arena. Just doing the 3 hrs before bed and 14 hour not eating thing in addition to my diet.
I would appreciate any opinions.
Thanks for listening and sorry if this should have been posted somewhere else on the site.
Jane
I want to help with prevention since i'm a pretty good genetic sample for risk but I am also being selfish and want to get a free MRI of my brain for a baseline and possibly be able to get the results from the amyloid PET to see if plaques are building up. I also would be interested in officially being neuro and memory tested vs. doing my own self evals.
HOWEVER, we know none of it is a predictor/indicator and might just make me more obsessed about all of this than I already am having found out my apoe status. Also they do a lumbar puncture and that is something I would rather not do but understand why. Also as we all know this going down the amyloid/tau path hasn't brought much result. so is it just another study that will show no effectiveness like every other one?
My stats:
I'm 53 and have two 1st-degree relatives with the disease.
• e4/e4
• Father died of AD at the age of 87 (was diagnosed for 14 years). apoe status unknown but i know he had at least one!
• Middle sister diagnosed within the year. Just turned 65 but has had symptoms for a couple of years I guess. (awaiting 23 and me apoe results - my guess is e4/e4)
• My oldest sister is 69 and fine (e3/e4)
• Mother just turned 92 and is essentially fine. In the last 6 mo. she is asking questions a little repetitively. But I would define her as FINE. (e3/e4)
• I'm fine for now. But scared to death. I'm more physically like my middle sister -- which I'm sure is irrational for me to think about but...I'll still bet money on it.
Meanwhile I am semi on Dr. Breseden's protocol and actually do feel that some of the supplements I'm taking along with exercise and brain training has helped. I've always eaten very healthy so I have not needed to do much of a change in that arena. Just doing the 3 hrs before bed and 14 hour not eating thing in addition to my diet.
I would appreciate any opinions.
Thanks for listening and sorry if this should have been posted somewhere else on the site.
Jane